Showers

I wrote this last week while we were in the hospital but I couldn't get it to post from my cell phone.

It seems like every day my showers get longer and longer. I use to be in and out in under 10 minutes but now it seems like I can't get under 30. This has turned into my crying time. There are some days I don't even get in the shower for fear of letting that first tear fall and not being able to stop. I cry so many different types of tears. I cry angry and sad tears because we can't seem to catch a break. I cry self pity tears because why does this have to happen to me?  I cry happy tears because of all the generosity of people.  I cry humbled tears because, as much as I yell at God, I know Heavenly Father has not abandoned me or my family. I see his hands and grace in my life everyday. As I'm crying I try desperately to regain my bravery to face the world again before the water runs cold. I hate crying in front of people because then I get the never ending questions. When people ask how we're doing I don't know how to answer. Do I bare my soul to them and break down? Or do I lie and say we're great? Do they really want to long, horrible answer? Or are they just trying to show they're thinking of us?
This week has been awful!  Brylee started having a really high fever of almost a 103. I took her to the local ER. The nurses and doctors had no idea what a DIPG was so I bawled in the ER explaining it to them so she could get the best possible care. At one point I even had to go home and get a port needle so they could access her because they didn't have one at the hospital.
Monday her fever got even higher at 103.4. This time we took her to the oncology clinic at Primary Children's. They gave her IV antibiotics and sent us home. We hung out at my mom's house for fear of having to go back to Primary's.  We postponed our Florida trip too.  There's no point in taking Bree if she's going to be miserable and not feeling well.
Tuesday we took her back into Primary's with the same fever.  They admitted us because they had no idea what was causing the fevers.
Wednesday they ran a million labs looking for some kind of infection and found nothing so they discharged us and sent us home.  Once again we went to my mom's for fear of having to come back.  That night her fever spiked to 105! She continued to spike at 105 all day Thursday, only coming down to about 101 with Tylenol and Advil.
Thursday night she went to bed at 7:30pm and slept till 2pm Friday afternoon.  I called clinic in a panic.  They told me to bring her in and they admitted her. We are currently still here. They still have not found anything. But her blood counts were low so they have her a unit if blood. They are blaming her sleepiness on the low blood counts.  Her fever has come down to about 100.8 which is good. But I'm so frustrated with no answers!
I'm so sad that we missed Florida! The kids were so excited to go. Maybe in a few weeks we can go.

I hate cancer!

I hate cancer!  And I hate chemo!  It turns my beautiful baby girl into the biggest brat!  She has been so funny, nice, sweet, and loving since we were done with radiation, chemo, and steroids.  Now, starting chemo again this morning, she was a beast all day!  She was sick and didn't want to eat anything.  She screamed and hit Byrklee.  She wouldn't share her popcorn with Bryker.  And cried the entire time that Grandpa Potato and Grandma Wendy were here.  She was a beast!  Why does cancer have to ruin everything?  Why does this sweet, beautiful little girl have to go thru this horrible nightmare?  Why can't it be me?  She's precious and innocent.  She is so young and has so much potential!  I've lived my life and have had my fair share of trials and joys.  Why doesn't she get to have hers?  Why won't she be able to learn what life has to offer?  She feels so yucky but doesn't understand why.  She has no idea how many people love her and want her to stay here.  I just want to go back to February and stay there forever!

Chaos

Wow it's been week since I've updated this.  We've been so busy!  By the end of the day I'm exhausted and this is the last thing on my mind.  We had a busy Mother's Day weekend.  It started with Saturday we pulled out our big bush in the front of the house to start Brylee's flower bed.  She promptly threw up everywhere twice so that project got put on hold for the rest of the day.  We also noticed that she's been having trouble chewing a swallowing again.  I noticed this first on Thursday when she choked on some water.  I then caught her on Saturday squishing string cheese on the roof of her mouth instead of chewing it.  I called the on call oncologist Saturday night to see if I should be worried.  She said that she would have our doctor call us on Monday.
On Sunday morning we went up to my mom's house and visited with my Grandma and Grandpa.  They are amazing and drove all the way from Mesa, Arizona to visit.  The funny thing is they only stayed for about 2 hours then went back home.  I love seeing them and wish I could see them more often.  My mom gave me a Mother's Day card that kinda struck a cord with me.  It made me so sad because she is so wrong.  She said something along the lines of that she hasn't been supportive of me during this time with Brylee and that she guesses my friends are doing a better job than she is.  You know out of all the people that are being supportive mine and Cory's family are the top dogs.  I mean my mom bought a king size bed and put it in her living room so my family had somewhere to stay for the 6 weeks of radiation!  If that's not supportive I don't know what is.  Cory's family has been supportive by helping with the Brylee in 5 fundraisers.  And everyone that is there for us and listens to our woes are supportive.  I don't want anyone to think that they are not being supportive.  If you read this blog or say hi to us in the grocery store that's being supportive.  And it's good enough for me.  I don't need millions of dollars or a million cards for support.  A pat on the shoulder is all the support I need.  A pat on the shoulder tells me you care and are thinking of us.  A text or facebook message saying thinking of you is good enough.  It's comforting and warming to know someone is praying for Brylee or wondering how I'm doing.  I appreciate every single one of our family and friends.  I couldn't make it through this trial without every one of you out there.  I don't want anyone to think that I'm ungrateful.  I appreciate every act of kindness offered.  Most of which bring me to tears.  I have never seen more Christ in the world than I have since March.  We have been graced with his love and your love.  We will forever be in your debt.
Monday I got the phone call from Brylee's doctor about her chewing and swallowing issues.  She said she wasn't overly concerned about them but that she wanted to see us on Wednesday.  She said that we might do another MRI on Wednesday.  When I got off the phone with her I laid Brylee down for a nap.  I noticed that her left eye didn't close all the way like it used to.  I was in full panic by Wednesday.  I had nightmares of the tumor growing again and her not making it to her 3rd birthday or to Disney World.  I was so shaky by the time we walked into clinic on Wednesday morning.  Her doctor said that after looking at her 2 MRIs she didn't think the tumor was growing.  She explained that when kids with neurological complications get tired their deficits show themselves.  The doctor then said that she feels confident about putting us in a new stage of treatment called maintenance.  In this stage we do 5 days of heavy chemo then 4 weeks of nothing then 5 days of heavy chemo then 4 weeks of nothing then an MRI.  We start the heavy chemo on Friday!  Brylee also developed another fever which they gave her an infusion of antibiotics while we were in clinic.  Her doctor told me that she's suspicious that all of these fevers are related to the damage in the pituitary gland and hypothalamus.  Brylee's tumor was so large that the area of the brain where the pituitary gland and hypothalamus are was hit with a significant amount of radiation scatter.  From her diabetes insipidus we know that the pituitary gland was damaged.  Now that she keeps developing fevers for no reason her doctor thinks that the radiation scatter may have damaged the hypothalamus also.  The hypothalamus regulates your body temperature, blood pressure, reproductive hormones and several other things that I can't remember.  This theory makes sense because none of Brylee's blood labs ever show an infection.
Well I will try and do better at updating this lovely journal of mine but I'm making no promises.  Today I need to finish cleaning my house.  Tomorrow we need to finish Brylee's flower bed so we can plant all the flowers before we go to Disney World so they don't die.  Cory and I also need to finish painting Brylee's room sometime this weekend.  Saturday is so busy, I don't know how I'll survive it all!  I have a 2 hour boot camp in the morning which goes straight into Moving Morning with Brylee at the Price Theater (We're watching BRAVE!  So come join us at 11AM).  Then I have to come home shower and get ready then go up to the elementary school to decorate for Brylee's birthday party.  Then we have to celebrate Brylee turning 3!  Then Sunday we have church then the golf tournament at the Carbon Country Club.  Then Monday I have to pack.  Then Tuesday we are on the airplane headed to Florida!!  Whoot whoot!  So excited for a vacation!  We'll be back home on the 27th.
Keep the prayers coming and know that we are so humbled and grateful for any measure of support from everyone!  We love you all!  Each and every one of you have touched my life.  I hope that we somehow have touched your life and continue to touch many lives in the future.  I know that Brylee will change the world whether it's here or in Heaven.  She is meant for missionary work and she will be an instrument in the changing of lives on this earth and on the other side.  She has already had an impact on my life and she continues to change my out look everyday.  I am truly blessed that I even get her for this short amount of time.  I love her and I love our Lord that has blessed me with her life.  I'm so humbled that He trusts me with such a choice spirit.

Forgotten

I have a surreal feeling every time I think about Brylee's brain tumor.  It's almost like I dreamed the entire thing up.  Our days are basically back to normal, as normal as they can be.  The kids are running around, laughing and playing like nothing ever happened.  Cory and I have been going about our normal lives and chores around the house.  It's hard to believe that she is terminally ill at all.  I have to catch myself when I'm going out to do errands to make sure I remember not to invite her so she doesn't catch a bug.  I have to catch myself when I come home to make sure I put on hand sanitizer so I don't bring anything into the house.  I have to remind myself to take those extra minutes that she wants me to hold her instead of telling her in a minute while I pick up the dishes.  I forgot to do most of these things today.  I got so wrapped up in how well she is doing that I forgot she had that stupid brain tumor.  I invited her to go to Tae Bo with me this morning only to have the ten minute melt down when Cory reminded me that it was a bad idea.  I forgot to hand sanitize when I got back from the store.  Cory, once again and always my hero, had to remind me to wash up.  I got so frustrated with how big of a disaster my house is that for about an hour or so I kept telling her to leave me alone while I tried to clean.  When I found myself accomplishing nothing I finally remembered that this sweet little girl is on a short time frame.  I immediately sat on the kitchen floor and scooped her up.  She promptly snuggled into my shoulder and fell asleep for over an hour.  I made Cory go get take out so I didn't have to wake her up so I could make dinner.  While I was holding her I wondered how I got so wrapped up in my mundane activities that I forgot about this sweet little girl and spending every waking moment with her.  I looked outside at the flower bed I'm suppose to be building for her and got so frustrated.  How am I suppose to do a lifetime of stuff in 9 months or less?  How am I suppose to give this little girl everything she asks for with neither Cory or I working?  We are so blessed that everyone has been so generous with their help.  If it wasn't for this amazing community our house payment would be getting paid.  Our electricity, gas, car, and food wouldn't be getting paid for either.  But for some reason I'm finding it hard to spend any money on a flower bed because I look at it as a car payment or dinners for the next month.  How am I suppose to give her everything when I don't have it to give?  I think I get so caught up in my everyday activities because when I have down time like I did today while she slept on my shoulder I think about all these questions and I just cry.  I cry and cry and cry.  I love her so much and my heart just aches. 

Cinderella Flowers

It's been several days since I've written anything.  I've been so bust with physical therapy, speech therapy, occupational therapy, and nurses that I haven't really done anything with my time since Thursday when we got home from the hospital.  We had a fabulous and fun fundraiser on Friday night at the Holiday Inn.  We played Bingo and it was a blast.  Brylee's ANC was pretty good so we took her to it.  She only lasted about an hour and a half before she got tired and we left.  I wish we could have stayed the whole time.  On Saturday we did nothing but work at our house.  Cory cleaned up the yard while I finally unpacked and did laundry from March!  Granted nothing got cleaned but almost everything got put away hahaha.

I need to give everyone an update on Brylee.  Everyone has been asking how she's doing and what the next steps are in treatments.  So here it is.  Brylee is doing extremely well.  All the therapists are making a huge difference in her walking and talking abilities.  Her mouth muscles are still not as strong as they use to be so her speech is a bit slurred.  But she is chewing and swallowing well and she's actually talking to us again.  I have my little chatter box back!!  Allow she may have to repeat her sentence four times before I understand her.  She is walking well.  Her legs are still a little stiff but she's trying to walk.  She'll walk till her legs give out and she falls over.  Then she'll push her self off the ground and walk some more.  She is such a strong willed little girl.  She's my inspiration when I complain at Tae Bo and Boot Camp.  She never gives up and I'm so willing to quit!  Ha she teaches me so much everyday as I watch her struggle but yet still have such an awesome outlook and a positive attitude.  Christ said to be as little children and I can totally see why now.  She is so strong and such an inspiration to me throughout my day.

As far as treatment goes we are finished for now.  Her doctor is scheduling an MRI for the end of May.  Depending on what the MRI show will depend on our next step.  If the MRI shows shrinkage and stability they will declare the tumor in remission.  This means that we will enjoy life with no meds and very few doctor visits for the next 4-6 months (or until symptoms start showing again).  When the symptoms come back they will do an MRI to see where the tumor is at growth wise and then most likely put her on a chemo and a steroid.  If the MRI at the end of May shows growth and unstability they will put her back on chemo and steroids and we will go from there.  Brylee will never do radiation again.  The six weeks of radiation that we just finished is a life time worth of radiation for anyone's body.  Sadly that will never be an option again for us.

Just a remind on what studies and statistics show for a DIPG tumor.  Once they are diagnosed the patient does a six week course of radiation, chemotherapy, and steriods.  Once that six week period is over they get four weeks off.  At the end of that four weeks they get an MRI.  The MRI usually shows that the tumor is in remission.  The tumor will stay in remission for about 4-6 months, giving the patient a normal, symptom free 6 months.  Then the tumor will start growing again, this time fast than the original growth.  The patient is put on chemo and steroids to try and stop the growth.  The tumor usually does not respond to this set of treatment and the patient passes away within a few months.  5% of patients will do this roller coaster of remission and treatments for 3 years before passing.

Brylee right now is showing no symptoms.  Cory and I are hoping that this means she is in remission and we get to enjoy our normal Brylee for 6 months or long.  We are praying that she is it that 5% so we have her more than her short 3 years that she has been with us (it will be officially 3 years on the 21st!  Happy almost Birthday!).

Yesterday Brylee told me she wants her room painted pink and that she wants to plant "Cinderella flowers."  WHAT?! Where did "Cinderella flowers" come from?  Hahaha I did a lot of flower hunting online with her on my lap looking at pictures.  She finally pointed to a picture of a purple hyacinth and said "That's a Cinderella flower!"  So this week we will be pulling out one of the bushes by our front door and making a Brylee flower bed.  And hopefully we'll get to paint her room this week also.  I guess the house work is once again put on hold.  But it's totally worth it!

Hip Hip Hooray!

We need to stop going to the hospital!  This is meant to be a daily journal and it has now turned into a weekly journal.  We took Brylee back to Primary Children's on Sunday for excessive drinking and urination.  Of course I was freaking out thinking I had another Type 1 Diabetic on my hands.  Brylee literally drank a 32 ounce powerade every hour on Sunday and went through an entire box of 44 diapers!  I was so freaked out that I checked her blood sugar which came back 66.  This caused me even more confusion so I called her doctor.  Her doctor said it might be something called Diabetes Insipidus and that I needed to take her straight to the ER and that I needed to pack for 5 days.  So 30 minutes to pack and a 2 hour drive with 5 diaper changes and we were finally there.  There did some blood work on her and confirmed that she has Diabetes Insipidus.  This disease is caused one of two ways: 1. Your kidneys stop working properly and stop accepting the ADH hormone that tells your body to maintain your water intake.  2. Your pituitary gland in your brain has stopped producing the ADH hormone.  Brylee has number 2.  It's technical name is Central Diabetes Insipidus because it is located in her brain.  There are several things that cause this to happen, one of which is a tumor in the pituitary gland.  Considering Brylee's history of brain tumors her doctors were very concerned that it was a second tumor.  They wanted to do an MRI.

There have only been two times in my life that I have been so nervous and anxious that I have thrown up.  The first time was after her very first MRI in March.  I couldn't hold anything down for three days.  The second time was Tuesday on Wednesday.  I was so nervous for that MRI.  I couldn't think about anything else.  Wednesday morning finally came.  We took her downstairs for the MRI.  They put her under general anesthia once again and whisked her away.  I thought I was going to lose it for the two hours she was gone.  Every time anyone in scrubs walked by the waiting room I had a flash back to March 6th and my heart started racing.  I was so high strung that I had to run to the bathroom.  I have come to hate that waiting room.  I hope I never have to see it again.

The doctors finally came and took us to Brylee in the recovery room.  They were still going over the MRI I had no news for us.  We got to take Brylee back up to her room and waited for another hour.  When they finally came into our room to tell us the news I thought I was going to pass out.  I was so filled with dread.  When they said there is nothing but good news I immediately jumped up off the couch and screamed "Yay!"  They proceeded to tell us that there was no second tumor and that the radiation had damaged the pituitary gland causing the onset of the diabetes.  They then proceeded to tell us that her original tumor has shrunk significantly!  It hasn't disappeared but I wasn't expecting it to have vanished.  I have been so thrilled the past few days.  Although there is so much relief and excitement I can't help the dread in the back of my mind.  I know that this demon will start progressing again eventually we just don't know when.  So everyday I watch and make sure she can still chew and swallow.  I watch her when she sleeps to make sure her eyes still close all the way.  I listen for her night terrors in the middle of the night or the scream when she's in her car seat and she thinks she's falling.  Every time she looks at me I tell her to smile to make sure each corner turns up in that beautiful crescent of hers.  I tickle her sides and feet to make sure she's still sensitive.  I have her squeeze my hand to make sure she still has the strength.  I am being optimistic but every time I feel some of the doubt and fear I make her completely each one of these tasks so I know she is still okay and that she is still mine.